sj75

i know , its so hard to know what to do for the best though. After having my reveal fitted last year i had a pots crash and that was only under local (although i had reacted to that and the iv antibiotics).

I was wondering with ga wether i would be monitored better though?

DON'T DO IT! I went GA in January for dental work and had the worst pots crash of my life afterwards that floored me until April.

If I had the choice again I would rather have sedtion and feel pain than face the crashing bp and crazy tachycardias I had.

Horrible

Never underestimate the power of GA on pots to make you feel horrendous

i know of others in the uk who have had ga's but dont know the criteria the nhs use for this (our private dental plan definitely doesnt cover it). My dentist has referred me to a specialist centre (nhs) that is specifically for people with special medical needs and i guess i will find out more when i see them, but im not sure whether a ga may be a better option if im offered it?

I am in the same boat, needing basic dental work done. I have been avoiding it, which is the wrong thing to do, but don't know how to get it done either. I'm like you--last time they gave me the non-caine deading agent, and it didn't work. I think I burn right through it too.

I would love to just be put to sleep and have it all done--is that a possibility??

ive got to have some dental work done and need either sedation or a GA for it. Just wondering which may be better for my pots?? i have the adrenergic form. I also know from previous heart procedures that i metabolise sedation very quickly and therefore tend to feel pain during whatever procedure it is.

anyone any ideas??

lol- i take it thats a no then!

hi guys,

I know its a bit early but i was wondering if anyone knew of anywhere that does these in aid of pots/autonomic issues? i would like to get some to send to my family to raise a bit of money and awareness (and to inform those around me who are clueless as to what life is like).x

I started off life as a nurse - I know that this can be a really tough job physically and, although nursing is a caring profession, it doesn't always care for its own.

that is sooo true! and unfortunately there are also a minority who dont care about the patients much either.

Im just to curious as to the high number of medical professionals that have pots and wonder oif something we are exposed to contributes??

dont know how far our episodes are behind in the uk, does anyone know the series and episode number of it??

i had a ep study and ablation in feb 06. Mine was slightly more complicated though as i had and still do have very regular episodes of svt, ectopics, atrial fibrillation and atrial flutter (think ive remembered them all). We knew before i had mine that it wasnt going to be curative as the inside of my heart was too electrically active but the specialists needed to get a better idea of what was going on and they did manage to rid me of some flutter. The procedure lasted 5 hours but due to the sedation i only remember little bits of it. There were moments when it was uncomfortable (insertion of the lines and during the burning of the tissue) but it wasnt half as bad as i anticipated, in fact it was probably harder for my husband who was waiting back on the ward.

Unfortunately for me, i suffered with pericarditis on and off for 18 months afterwards and my pots started after my ablation, but i have to stress that that is extremely rare and my consultant has still to this day (despite doing 3 whole days of ep/ ablations per week) only ever seen one other case like mine. I believe for svt it is a simple ablation and has a higher success rate.

i dont believe they can give adenosine during pregnancy and dont like any anti arrhythmics to be used, ablations are often used as an alternative to medications even if the meds work. I would defintely try and get this sorted before pregnancy if the option is available to you as the hormones in pregnancy can make svts worse. good luck.x

i will do , thanks. I know she drinks a lot of water but then is in a vicious circle as when she wees she passes out, apparently she was pretty much out of it for 3 hours last time and when she woke it was because all the water had reached her bladder so it was a bit of a catch 22.

anyone know if they ship to the uk?

Flop, can you give me more details of the company you use??

thanks so much guys, i will pass that info on, i dont think she is on any meds and is currently onlys under the local general hospitals care, i will suggest that she gets referred to somewhere more specialised.

Are there medications that can help with this?

i have a friend whos daughter has been diagnosed with ?cardiogenic syncope. When she goes to the toilet she passes out. I remember reading something about this on here a while ago and seemed to recall it having a name. Does anybody have any info on this or know the name so i can let her know??

hi flop, thanks for that. Its all starting to make sense now. I dont suppose you know the normal uk results values for the 24 urine collection for hyperadrenergic pots testing? i cant find it anywhere.x

I posted about my bp the other day as when my pulse goes down my bp goes up and vice versa. Look at the post 'wierd bp' as i had a really helpful answer that might explain things a little. x

thanks so much for that, it makes more sense to me now although i wish the drs would have explained it in the first place. Its just strange to think that the tablets i take (that are also used to lower high bp) make mine higher. Its also nice to know that 40% of potsies have the hyper form as i was led to believe (by my drs) that im unusual in that. I think the Uk has a bit of catching up to do where pots is concerned.x

im trying to get my head around why my bp does what it does but am not quite there and wondered if anyone could help. Im on a beta blocker to reduce my pulse but i know they also reduce bp. I find that when my bp comes down my pulse goes up and vice versa. I dont have typical pots as my bp goes up rather than down, i also notice that the gap between readings is very small eg 120/100 and wondered if anyone knows what this may mean?

it took me years to get a diagnosis as it just doesnt seem to enter the drs mind in the uk. Having said that this is changing. Whereabouts in the uk are you? have you had a tilt table test? seems fairly crucial to getting the diagnosis over here according to my doc?

i was just wondering if anyone knows what the normal results should be for noradrenaline, adrenaline and dopamine???

i cant help other than to say that i have exactly the same fear, going out can be a real problem for me as i dont want to be ill in front of anyone. I wish i knew what the answer was.x

this thread is fascinating to me as i am convinced that my ablation caused my pots, i was so ill after it and the pots appeared within a week and has been here ever since.x

please tell me that wasnt oxford!!!

btw check out pots uk on fb.x

Im really excited to find others under the care of oxford, pots is so poorly understood over here its nice to come accross others being treated in the same county.

I am speaking to the pots nurse specialist at sheffield this week and will try and find out some more info. Its too far away for me to attend but if it can help other sufferers thats great. Would love to see one started around oxford as that would be a real sign of progression here in the uk.x

I too am in the uk and under the care of the john radcliffe, they have taken nearly four years to get me a diagnosis as its just not something that seems to enter the radar in the uk unfortunately but my cardiologist is great and the hospital as a whole is brilliant.

There is some great stuff being intitiated in the noth and the start of some support groups around the sheffiend area i believe.

i asked in the library and they looked at me like i was mad!

thanks for the leads, i will check those out. Would be really nice to read something designed for sufferers not drs.

sj.x

Thanks guys, im looking forward to the release of some books about pots.

sj.x